OT evaluation

Thomas screens for sensory processing issues, so we decided to get him evaluated by an OT.  He has a lot of sensory defensiveness when it comes to movement within a group and sitting in circle time. 

The OT evaluation was very difficult for Thomas.   We talked about it a lot before we went, but he was very anxious there.   They were aware of his SM and I thought they handled everything very well.  When they called us in he was in good spirits, but they led us to the gym where the toys/exercise things were and he planted his feet and refused to go in.  He was screaming and saying he wanted to go home.  The gym wasn’t loud or crowded, but something about it scared him.  After a few different attempts, the therapist brought some toys to a small room where he played while I discussed things with her.  He would not cooperate in any way.  He refused to stand up and do certain things, so she wasn’t sure how to evaluate him.  She said it was very clear that anxiety was the big issue and the need for control, which we already knew.  I told her we were doing CBT with him.  She thought he seemed to demonstrate more limitations due to anxiety rather than sensory given that he accepts sensory input in the home environment or when he has control.  Although she said they would be able to help him with things like movement which he has difficulty with in a group, it would require his participation in the gym and felt she didn’t want to push him to do things and cause any disruption in the progress he has been making.   She had her supervisor come in too and after observing Thomas doing his own thing and asking me questions, they didn’t feel he had any major sensory issues and didn’t believe he would benefit from their therapy at this time.  I did not agree.  They gave me some ideas to work on at home. 

Yes, I was disappointed that things didn't go better, but after being in that waiting room and seeing some of the other children who had physical diabilities waiting to go into PT, it put things into perspective for me.  Yes, we struggle every day with SM, but there are so many worse things out there that other children and parents are facing. 

Progress

Thomas is continuing to make progress with his CBT goals pretty rapidly, especially over the past few weeks.  He now feels pretty comfortable placing his order wherever we go.  He is continuing to wave when he feels in control.  He also started answering common questions this week with a verbal response for the first time!  He did this twice, so we’ll see if it continues.  We had a repair man come to our house and he asked what Thomas’s name was and when I gave him two choices he gave a verbal response to him!  The same thing with his age.  Also when we took him to his OT evaluation yesterday, he answered the same questions and also talked a little about his brother once he warmed up. 

One step forward, two steps back

As a parent to a child with SM, there are a lot of emotional highs and lows and the journey always seems to be one step forward, two steps back.  There are days when everything seems to be going great and progress is being made, but while you are riding that wave of success something inevitably will knock you down and it doesn't take too long.  Today was one of those days.

I had given the teachers a notebook to write in after each school day to let me know if Thomas did particularly well in one area or any struggles he had that day.  His doctor recommended this and although I know it's annoying for the teachers, it will be very useful to know what we need to work on.  I feel like it will give me a better sense of what is going on in the classroom, as I really don’t know much.  Thomas talks about school, but he's not going to say "Yes, mom I initiated conversation today" or "I am doing great at interacting with the other children." So after about a week or so, I collect the notebook to read and then return it. 

I got it back today and was excited and nervous to read it.  This is what I got from it so far:  Thomas
is talking a little bit in class and participates in a lot, but the teacher said that children are starting to ask why he doesn’t talk.  I am happy with how they dealt with this, but it is so sad that they don’t know the real Thomas.  They also said he stands under the slide when doing some outside activities and refuses to participate in a lot of activities that involve movement.  This just kills me.  I can just picture him standing under the slide all alone wanting to participate but paralyzed with fear.  Thomas loves to be silly and is constantly on the move.  I know he wants to join in, but he just can't.  It makes me sick.  All I want to do is to get him through this.  Children should not have to be paralyzed by this type of anxiety at such a young age.  That is why I am so dedicated to his therapies, because I am determined to make sure that he does not live like this forever.

We start OT next Thursday on a regular basis, so I am very interested to see what they have to say about his sensory defensiveness.  Although we may get knocked down, we'll continue to get up and try again and again and again.

The flood gates are open!

Now that we have broken through Thomas's fear of waving to people and having him see them wave to him, he wants to wave at everyone!  We took a walk the other day and he waved to 11 different people along the way.  He would get upset when someone wouldn't wave back.  Ha!  The irony!  If you are a parent of a child with SM, you truly appreciate the little things that so many other parents take for granted.  A child waving is usually an everyday thing, but to see Thomas actually using his hand to wave was amazing and truly made my year already!  There are so many struggles with this disorder, but watching your child over come a fear and break through that barrier that has been holding them back is truly such an amazing feeling!

We are waving!

Children with SM often have a lot of trouble with greetings- Hi, Bye, etc.  There is pressure from an early age to say hi or wave and the pushing of this creates anxiety and resistance.  Thomas would never wave to anything, let alone a person.  When we began our cognitive behavioral therapy back in August, we were encourage to try waving at inanimate objects and build from there.  We were not discriminatory in our waving in any way-LOL.  We waved to fire hydrants, doors, bushes, trees, birds, cats and then moved onto buildings that would probably have people in them.  For example when we went by a fire station or police station, I'd say lets wave to the firefighters.  Since Lucas couldn't see them, this made it much easier for him.   First we would do it from the moving car where he felt safe and later at closer distances.  I'm so proud to say that today he waved to his first adult up close.   He was okay with them seeing him wave and liked when they waved back.  He will not respond to a wave hi or bye, but he now seems to be getting comfortable being the one initiating it.  This is brand new for Lucas.  It usually helps to remind him that he can get a sticker for playing the waving game.  I just put him on the front line by holding him up to the counter of places and he is starting to wave.  He waved to the cashier when we were checking out at CVS and also up close with the librarian today.  HUGE progress!    

Back to school after the holidays

We started back at school this week and Thomas did really well with the transition back into the classroom.  I was hoping that since he had started waving in other places, he might want to start waving to people at school, but he is not comfortable with that yet.  

I met with the teachers to discuss how he did the first day back and he did call out something during circle time about the book they were reading, so the teachers thought that was great.  He was also talking with the teachers very well when it was just them and us during our meeting.  They informed me that he still won’t sit in circle time, but he sits very close to the circle in a little toy area.  I completely believe this is sensory related, because he won’t sit on any floor with children at school, the library, church or anywhere.  He actually told me the other day that he wanted to sit in circle time, but that there wasn’t “enough space.”   He is also having trouble at chapel time at school where they sit, kneel, stand, fold their hands to pray- any movement.  Dr. E. has told me that she thinks his sm might be stemming from some sensory issues, so I am in the process of setting up an appointment with an OT who deals with sensory processing in children that is near our house and is covered by insurance. 

Hello 2014

Thomas had a really good first week of 2014.  He was in very good spirits and his confidence seemed to be increasing.

He started waving hello and goodbye to people up close when I’m holding him.    He will not respond to a wave hi or bye, but he now seems to be getting comfortable being the one initiating it.  This is brand new for him.  It usually helps to remind him that he can get a sticker for playing the waving game.  He has many games to play as part of his cognitive behavioral therapy (CBT) and this is one of them.  I just put him on the front line by holding him up to the counter of places and he is starting to wave.  He waved to the cashier when we were checking out at CVS and also up close with the librarian.    

Another part of his therapy is being on the lookout for common questions-"What is your name?,  How old are you? , etc.  Thomas and I made some common question flash cards together and he is excited to use them.   He is still having a very hard time with the “tell me” approach, which is part of our therapy and so I think this will help.  We brought them to the grocery store this week, but no one asked any of his questions.  At the end of the trip, he kept saying “How come no one asked me any super questions?”  So I am thinking he is ready to answer them and he will feel comfortable with the flash card aid. 

We are meeting many of his therapy goals for this month, including scavenger hunts using full sentences when asking for things, ordering, waving hi/bye and utilizing his scary chart.

Also for the 1st three nights of 2014, little brother who is now 6 months old slept throught the night for the 1st time ever.  It only lasted those three nights, but it gave us a chance to catch up on a little sleep before the night wakings began again!